Life With Fibromyalgia And Hashimotos Thyroiditis 12.20.2014




I really had no plans to write this but I noticed a few people were reading an update of mine from 2011 on this very topic and I just couldn’t let that happen. Believe me, not much has changed but I thought I owed it to you to at least change the date and update you with my thoughts.Hashimotos Thyroiditis is an autoimmune disease of the thyroid. Many people have this condition in conjunction with other illnesses.

Having Fibro and Hashimoto still sucks. Big time.

No surprise there, right fellow sufferers? My number one complaint is not having any energy and if one more person tries to tell me to exercise more (including my new Rheumatologist) I will want to slap them silly. I should have stayed with my old Rheumatologist,  he loved me best but I just couldn’t go see him in the city anymore. I didn’t have the energy to take

 

trains and buses and taxis and walk up two flights of stairs and down two flights of stairs. It’s not as if I dropped him, he was so sweet and understanding, Fibromyalgia did.

I now see a not so nurturing Rheumatologist in town and her motto is basically “Get over yourself and exercise.” She must know my mother.

I KNOW exercise is good for me, for us, but it sounds better than it is. Fibro Flare, really? I hope you have more discipline than I do because I need tips on how to haul my hurting rear out of my bed and on to the treadmill.

Anyone?

I KNOW it is not good for us but I COULD stay in bed 24/7 because of the exhaustion. Couldn’t you?


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I’m on Savella twice a day, I was given a choice between Savella and (Fibro Fog, can’t remember the other one’s name but it is widely used and known to put on weight) so I chose Savella. It helps. Is it a cure, ha ha ha. NO. There is no cure, as we all know.

I’m now considering myself LUCKY that I got these illnesses when I was 50 when I hear stories of young when who get these illnesses in their twenties. I feel for you young ladies, I truly do.

What’s the worst part (parts) of Fibro for me? No memory and no energy!

No memory. None, Nada, Zilch. It scares me to pieces. It really does. I go upstairs to get a sweater and as soon as I go up a short set of stairs I am turning around in one room and then another NOT KNOWING why I came upstairs.


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Yes, it freaks me out. Anyone else have this too? I need reassurance.

That, and having no energy except for one or two errands ( if I am lucky) every day or every other day. Buy the way, between hearing loss and forgetting I have young adult children (especially my daughter) who still makes me feel like dog shit when I don’t remember what she told me. “I TOLD you that…” and she may be referring to a year ago or two weeks.

I feel bad about myself as it is, but wow, I feel worse after one of those angry, “how stupid ARE YOU? looks.”

Researchers say they made a discovery about nerve pain, but to tell you the truth, it’s just words on a page. There has been no further development to HELP US. If you have found something, please let me know.

As for now, do the best you can, give each other support, I’m here, lots of Fibro Friendly people are on-line. Some of my best friends started with a now defunct Fibromyalgia group but we have stayed friends, close friends. (There is no image for a group of people in pain and smiling, I tried.)

I wish you all good health, good luck and better things to come in 2015.

With love and empathy,

Always.

 

Dear Stupid Pesky Migraine,

BACK OFF. No, Really, Back the flippin bleep off. Got it? Good. I’m pretending that you are just a regular, tiny headache and I’m still in full control of my life. Sure, I’ve dimmed the lights, for a cozy, romantic look but that proves nothing.  I just have a minor headache and even though I am squinting, it’s because I took off my glasses so I could see better. You understand, I’m sure.


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I’m new to this world of migraines so I don’t have a whole lot of experience, do I take that preventive medicine now or am I wasting it? I don’t know. I really don’t, I guess I’ll wait, in an hour it will be better or much worse.


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I know I am tired, I have been tired all day because I didn’t get enough sleep and I wish I could tell you that I had a great time last night drinking and dancing at some fab party but frankly I haven’t been to a party since my sister’s surprise party which really wasn’t that much of a surprise.There was no drinking or dancing there (at least for me) just Jane’s quinoa salad which I hate to admit, I really liked, because she had raisins and craisins and dried apricots in it. Fruity quinoa, who knew?

Why have I recently developed migraines at the advanced age of 57 years of age? I have no flippin’ idea. I got through the first one at the ER after hours of agonizing pain


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and finally they gave me a shot of something wonderful so I could get some sleep and the pain eased away so very slowly. I discharged myself after the first round of medication because I wanted to be home in my own bed. My counterpart in the next bed, with the same exact diagnosis, chose to stay in the hospital and get another dose of pain relief.

Can’t say that I blame her, looking back, If I had known then what I knew now, I’d still be in that bed smiling in my safe slumber. I wish they had given me a strong medication to take with me but they don’t trust us normal pain people with “abusive substances” as if one Percocet would put us over the edge. Anyway, all I wanted was to get out of the hospital, infestation hotel of germs and creepy-crawley things.

So, do you really think I needed ANOTHER INVISIBLE ILLNESS to add to my plethora of symptoms because frankly, I thought I had enough. I KNOW I had enough. Is this some cruel joke or do you think this is wildly hysterically funny?

I’m not laughing, I’m disgusted, fed up and sick of all these unrelated illnesses that I keep dreaming about a miracle cure or at least ONE interested doctor that will take it upon him/herself to try to figure it out. Got no volunteers except the mother of a son (who used to be friends with my son) in elementary school. That’s the closest I have and I truly appreciate her interest. Nobody cares, anymore. That’s what it feels like, that’s what it is.

All those one in a million doctors that take the extra time to try to solve the puzzle, I haven’t found one yet and yes, I’ve been looking. Any volunteers?  I will beg if you want me to but nobody is sending me emails or sending me SOS messages that spell out ” I WOULD LOVE TO HELP YOU ANSWER THIS MYSTERY, LEAN ON ME.”

In the end we each have our own shit we have to go through. I sure have mine. Apparently, It will stay mine forever. All mine. Because, in the end, nobody cares, let me introduce you to Medicine 101.”IT’S JUST NOT THEIR JOB, DEAL WITH IT, IT’S ALL UP TO YOU. LOOK WHO IS LAUGHING NOW, IT SURE ISN’T ME!”


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Loving The Ocean, Settling For A Lake?

Dear Fibromyalgia,

Another loss, another dream dashed, this one really hurts. All my life my dream was to live in a small house near the ocean. It was my fantasy, the one thing that I could think about when I felt a little down or when the Winter seemed unending.

Rainbow Waves (Photo credit: The Uprooted Photographer)

Someday…I told myself, I will live in a beach house, and swim in the ocean. To me, the ocean is life, it is majestic, magical. It is the one source of pleasure I can count on, always.

Ever since I was a child my favorite activity would be to collect shells, to feel their shape between my fingers. What were the dominant colors? I used one as a “worry stone” others shaped like hearts I would give to my children. Another one with a little hole on top, I used as a necklace.

Seashell (Photo credit: Moyan_Brenn (back soon, sorry for not commenting))

When I was hot, I would drift into the ocean between the two green flags and submerge my whole body and head into the oncoming waves. I was not a timid swimmer. I loved to jump wave after wave, it was thrilling for a scaredy-cat like me. It was adventurous and bold for someone scared to take chances.

In the water I was brave, confident, and happy. It was hard to get me out of the water but when I came out, usually under protest, I was out only until my swimsuit was dry, and then I went back in. I never had the patience to lie in the sun just to get a tan. Never. If I was in the sun for more than three minutes, it was far too long.

The beach was MY place. My secret place. I can’t even allow myself to have the fantasy anymore which saddens me. I have no balance and no strength since I got Fibromyalgia, seven years ago. My life was stolen from me, little by little. The last time I went into the ocean was in Florida, three years ago, with my daughter, and I couldn’t get up out of the water. I kept getting thrown under, again and again until I couldn’t breathe.

Fibromyalgia Eye (Photo credit: Vinally2010)

I needed her to help me get up. It took several times.

I lost part of myself that day and every day since. I know now that it IS a progressive disease, I feel it. I know with time I have gotten worse; my dream will never come true.

Beautiful, Tranquil Water (Photo credit: BrotherMagneto)

If I ever get to live close to the water it will have to be a lake but that’s not nearly the same as the ocean, not even close. Dreams die, health fades, burdens multiply. We cannot do anything else but accept. Accepting graciously is one option. I’m not there yet.

So, Thanks Fibromyalgia, you not only messed with my body this time, you messed with my dreams and emotions too. Way to go.

Sending Love Into The Universe

 

I have just changed my life. It is Monday and I have just sent off a piece of the new me, courageous, CONFIDENT, CHANGE MY LIFE – ME into the universe, the big, bright blue sky.

 

Angel-wings (Photo credit: johnb/Derbys/UK.)

 

Yes, I’m taking a chance at doing something different. At least, I am trying. I’m sending this with a hug and a wish out to the atmosphere, with the Spirits that I believe in, with my Angels and my Dad to help me when he can “there is only so much he can do. His hands are tied.” I don’t doubt that for a second, I trust you implicitly. Just so you know. I love to imagine that you are not in pain anymore and that I can almost hear you laugh, and I can practically stroke your soft, sweet face, I would smell the shaving cologne as strong as you used to splash on your neck.” The perfume factory.”

Angel (Photo credit: Stephie189)

I’m trying, to rev up, like the motors of the airplanes you used to love, worship. The rumbling has started within me. For the first time I am trying for lift-off instead of being grounded forever. I too, need a change. I need to get out of the shadows and into the sunlight and through my chronic pain. I can do that.

I know I come across as pure emotion but as you know, deep down inside me, I am very, very strong, I will come through. I can handle what the world gives me, I should certainly be able to handle change, a new direction, movement, and climbing out of my comfort zone. I will do it with Faith and Spirit on my side.

Let it begin. I’m Ready.

 

 

 

Miley Cyrus, The Climb

 

 

I Already Said I’m Imbalanced So Shut Up

I just bought a cane. A dull pink one straight from the pharmacy. If it really helps my balance issue I will special order a  cane that will have turquoise and a tiny bit of shiny silver and beautifully polished … Continue reading →

The Songs I Sing

Music ~ Be There For You (Photo credit: Daniel CJ Lee)

I have written songs in my dreams for many years. I don’t write songs every night, but once in a while I write the lyrics in my sleep, beautiful words are strung together that blend into a harmonious chorus. Upon wakening, I forget everything. It’s time to take out the notepad and put it right next to me for these times, to try to force myself to remember my dreams and to remember the words to a song that needs to be sung.

Consciously, I don’t know what the songs are about although anything that has to do with me must have love in it and probably conflict too. They generally go together, don’t they? Love spreading it’s wings, love in nature too: the ocean’s symbol for how unpredictable life can be, the sun, darkness, tragedies, the magic of birth, love, that unite us all.  It only takes one lit candle to give light to another. When I was young I thought the world was a friendly place, united and peaceful but I have given up hope. I’m not innocent anymore; I’ve seen too many senseless tragedies to believe that the world is good, too many jaded memories, too many senseless killings.

Physically, my body aches, I can tell when I have a fever when my legs hurt and my skin is sensitive. The throbbing in my head has been constant, aspirin and allergy pills have done nothing. My dog is having a barking competition with the dog next door and that is making my head ache even more. Music, which always soothes me, doesn’t help, even on the lowest volume so I turn it off and lay flat on the bed. My blankets cover me, I try to close my eyes but my arms shake and there is something uncomfortable about me, an illness I cannot define.  Is it Fibromyalgia? Is it a virus? Is it a reaction to the flu shot? Is it my auto immune disease, Hashimoto’s Thyroiditis? Whatever it is when will it go away?

It turns out it takes the better part of the week but it is leaving my body now and for that I am grateful.  I realize, however, that I am saddled with two difficult diseases that make anything hard to live with and to diagnose. Sorry, I don’t mean to be disrespectful but that part alone sucks. I try not to dwell on the chronic illnesses they just pop up in situations like these, I know I have to live with them, co-exist, not in peace but in acceptance.

I look around my bedroom and I feel uneasy, it is the one room I would like to organize and fall in love with again but I certainly don’t have the energy to do it now. I need to love my bedroom, but I can’t, there is too much clutter. Clutter everywhere, this room used to be my sanctuary, a place I would go to be at peace. Now, it represents too much garbage and disorganization, books, perfume, two kinds of deodorant, an old coffee mug, a bottle of water, a flashlight, a phone, old photographs and that is just in one space. I know this is not good for me, I realize it.

I need to clean, to put things in their proper places, to organize my space, my world, inside and out. Whether or not I capture the words of my songs on paper, I need to sort things out in all aspects of my life.  I know that once the physical space is clear, I will make the choice, that the music will be a wonderfully complicated, song with a lot of tenderness, love, warmth, grief and of course, a touch of the blues. It’s real life, after all.

photo credit to above named photographer

@copyright

In Between Love and Loss

Love Hands (Photo credit: Luvinshots)

Love is not easy, but it is essential. Why do we all go on with our lives? Day after day shuffling our feet, not smiling sometimes for weeks or months, nothing to look forward to, nothing special on the horizon? With so much misery, disease, tragedy, war, incurable illnesses why do we accept it?  It comes down to one thing and one thing only: Love. You don’t need a crowd of people to love you, it can be one person or one quirky brown dog, or a petulant cat, maybe a goldfish named Frank, or wildflowers in a garden. We live for love. That is the ultimate dream and if you love one friend and the person loves you back you are incredibly lucky. Everything counts.

Love keeps us going when we want to give up, there’s a thread of love that inspired this blog from my friends. There is love between a group of friends and we have never met, there is a closeness, whose hearts and souls connected on a higher level. We may have originally gotten to know each other by our chronic illnesses, auto-immune diseases or fibromyalgia but that is the last thing we talk about now. If we lived closer to one another, they would be my safe place, my soul sisters.  We offer peace, love and kindness to each other, there is no judgment, just support.

I’m not unrealistic I know love isn’t always about happiness, when you love someone so much and they die or move away or just because they grow up and relationships change. Nobody tells you that when you are pregnant, that love also hurts, that love is also loss. Even if they told you, you wouldn’t believe them anyway. When you love your children so much and they walk away as strong, independent adults you are very proud but sometimes, if you are honest, it really hurts. Is it rational? No. It’s purely emotional.

I respect and admire both my children. But, part of love brings with it a searing unavoidable pain and there is nothing you can do about it. Without pain, we wouldn’t know how wonderful love really is.  The thread of love, twists and changes, every single day and night. You can’t control it, you can only change yourself and how you deal with the changes, like the waves of a turbulent ocean, strong, beautiful, unpredictable. Unconditional love is for children, it never ends, and I’m sure our children will not understand until they have grown up children of their own.

One day you are holding their hands to cross the street, trading toy cars or having a tea party, watching a shiny red fire truck, or playing dress-up and the next day, or so it seems, they are adults. They are adults you are proud of and cherish but they have their own lives now, and you are not the biggest part of it.  “Home” is someplace different now and just because they have a week off doesn’t mean they want to see you. First it’s a shock, then it’s a change but you get used to everything. This was never about guilt. I don’t want you to change for “the next time.”  I wanted you to let it go. Growing up sometimes means you can’t always have the last word and sometimes it means letting things go, if not for you, than for me.

“End of conversation. No new conversation.”

I love you, unconditionally with all my heart

Matchbox Toy Cars (Photo credit: sarflondondunc)

(Photograph credit by photographers listed, I own no rights)

How Fibromyalgia Stole The One True Love Of My Life

Ocean waves (Photo credit: This Is A Wake Up Call)

Damn this disease. Yes, I know it’s a chronic illness and I have lived with it for over six years, I try not to complain, but that doesn’t work 100 percent. I deal with it the best way I can and each day is different. It has limited MANY outside activities and it has given me pain, incredible weakness and undeniable imbalance. I can handle pain, it’s bearable most of  the time and when it is really bad take pain medications. It’s the “flare-ups” that plague us, those really bad times that are triggered from….pretty much anything.

I am miserable that I cannot open a jar  anymore though I do not have Rheumatoid Arthritis. That is good news so why am I so weak that I have to ask my daughter to do it for me? My doctor’s prescription : “Squeeze a rubber ball.” Really? This does not give me very much confidence but I try to remember to squeeze the ball, when I remember. Remember? That needs a whole paragraph on its own.

Anyone who has Fibromyalgia will know exactly what I mean: the dreaded “Fibro-Fog.” Remembering to do anything with Fibromyalgia is a diseases in itself. I can recognize a face of someone I went to elementary school in an instant but everything else is cloudy. My family/friends are dealing with a person who never remembers what they say.  Imagine how frustrating it is for them and how embarrassing it is for me. “I’ve told you that five times already…” even I, would get incredibly impatient. I’ve seen one too many “eye rolls from my teenagers” to last a lifetime as any parent of teenagers can relate to. It’s horrible to live in a Fibro Fog, cloudy, all the time. That never gets better and it’s probably the one that is hardest for me. Everyone forgets things occassionally but all the time? It’s not Alzheimers (I’ve had a brain scan) it is from Fibromyalgia.

When we save enough money to go on vacation, I always think: the ocean. I have loved the ocean since I was a little girl. I remember being taught how to jump the waves, when to jump over and when to hold your nose and dive underneath. It was a delicate balance, thrilling and exciting, sure sometimes you made a mistake but that was part of the fun too. You just never knew which way the mysterious and unpredictable ocean would go.

I was thrilled when a few days ago my daughter and I were at the ocean. We rode the waves, the water was a bit rough and as I noticed we were getting pulled by the tide, I motioned her to start swimming back. We had drifted off a ways and I wanted us to go back to the direction where we had dropped our sandals and towels. I went first and then the most devastating thing happened to me. I could not get up and out of the water. Truly. I tried six or seven times to get back up and I could not do it, I tried to stand and before I got my balance another wave would pull me down again, over and over. It was in the shallowest part too, tiny pebbles, sand, strong waves at water’s edge. I couldn’t do it by myself and I felt so discouraged, so sad.  Luckily, my daughter saw me and offered me a hand and I was able to get up.

I couldn’t get out of the water on my own. I found this to be so depressing, so disheartening. My one true love, the ocean, my ideal place to live, had been stolen by Fibroymyalgia. It had taken away my strength, my independence, my joy. My favorite place, my favorite time, my favorite fantasy to dream about for the future, disappeared because of this illness. People ask if Fibromyalgia gets worse?  I  say yes, in more ways than one. It affects your body, your limbs and your pain; but more importantly it visciously tears at your heart, over and over again.

Carry on Tuesday: Once Upon A Time

Out of fog Bay Bridge and Golden Gate Bridge and San Francisco in fog and crepuscular rays. (Photo credit: Wikipedia)

There was a time once, not so long ago, when I was chubby, fat, or just pleasantly plump. In Italy I would have been a goddess. Men would have followed me down the cobble stoned streets, whistling and begging to touch my beautiful breasts and my bountiful behind. Unfortunately, I wasn’t living in Italy, I was here in the United States, where all I really wanted was to be slender. I thought if I was thin, all my problems would dissipate like the mysterious fog in San Francisco. I imagined the fog lifting while I watched, wearing a heavy knit red sweater and sitting peacefully on a huge rock.

A couple of months ago I was very sick, (on top of my chronic illnesses” Fibromyalgia, Hashimoto’s Thyroiditis, IBS) I couldn’t eat, I couldn’t leave my house or the bathroom for an entire four weeks. I was pale, gaunt and looked ill. People on the street would ask me guardedly “If I was okay?” Part of me, if I had a sense of humor back then wanted to say “Of course, I’m in the middle-aged super model competition” but I had no sense of humor at the time. The other part of me was scared to speak so I just said “I’m fine” which people accept with relief and don’t follow-up with questions.

All my life there was always something about me that I wanted to change and after I changed it, I thought I would be happy: my weight, my hair, my glasses, wearing make-up, dressing better, nice shoes, tinting my hair to cover the tiny amount of gray that swirled in front of my face. The gray hair that I had been so proud to have, to acknowledge my real place in the world, as someone who had already experienced a great deal of life and had earned them with pride.

Having been married for 24 years with two young adults doing well in college was proof enough and even though I did go through a time feeling sorry for myself that the kids ” didn’t need me anymore” I realized my husband and I had done a very good job of parenting. I admit, I needed to remind myself that loving and needing were two very different things, they would love me as their mom but their lives and our lives would be constantly changing. Yes, sometimes it changes so quickly it was hard to keep up, that’s when I found myself alone, crying into an old, soft, handkerchief and feeling sorry for myself. I learned to accept that too. You have no choice.

Six weeks ago I went from eating and being lively to not eating and not feeling well, I lost over 30 pounds and before you coo and ooh and ahhh and wish it was you I can tell you, you better take that back. I did not enjoy clothes falling from my body, or food flowing through me, and not being able to go outside of my house for four weeks. The doctor scheduled me for every “cancer” test known to humanity and that was not fun. The doctor, not known for his bedside matter, actually told me WHAT he was testing for when we first met him in his office. Thanks, Doc, nice touch.

I will be getting the results later this week, I’m hoping that everything will be fine, I’m ( fairly) certain that they will be. The symptoms stopped a few days after my office visit and while I haven’t gained a lot of weight back, I do get hungry and I feel better. My newest ( little ) problem is this: I went to shop for new jeans and found that there are no jeans for women of my age. They have skinny jeans, under the waist jeans and jeans for teenagers with lithe bodies. Basically, the clothes that I have are four sizes too big for me and the style out there now are for teenagers only. I have nothing to wear, I miss my “Mom jeans.” It is impossible to find them, anywhere. Suggestions?

All that I have accomplished in this quest are the lack of clothes to wear and the acquisition of numerous wrinkles. I sat outside in the sun for a few moments, noticing all the wrinkles on my knees and thighs that were not there before. As I sat, warming my face, was I thinking about the good things in my life in a delighted way? No. I was thinking about the barium test (drinking chalk) that I have to drink tomorrow morning at eight am and where to aim my projectile vomiting. That, at least, is amusing me.

Be happy with what you have and who you are. As my dad used to say “Health is the most important thing.”  It’s the only thing, be grateful.

Fibro UnFriendly

Image via Wikipedia

If Fibromyalgia was a mood and not a chronic illness, it would be grumpy, mean, hateful and cranky. It would be the scariest monster that rages everywhere, over my bed, not even bothering to hide but willfully taunting me in the open. Once constant factor is the weather and its changes, enemies.  I want to set up all the old green plastic soldiers that my son used to play with constantly and place them on the Batmobile and fire truck and police cars and surge through dividing lines. I want to storm the troops of Fibromyalgia pain and run them over completely. In my fantasy, all that would be left in their place would be peace and pain-free living.

I know, I’m living in a dream world but it is better than the one that I am living in now. At night, which used to be my savior, snugly asleep under the covers, has now become another battleground. Pain wakes me up, the newest pain is in my arms and elbows and I never feel well-rested. I try to ignore it at night but minutes later it wakes me up again. I imagine the enemy mocking me, sneering at me as if to say “you thought I was only going to appear once then go away for the rest of the night? HAHAHAHA” ‘That is what I was hoping for’ I try to mumble under my breath.”FOOL” they spit blood right back in my face.

Why do all these new pains seem to intensify after my visit to the Rheumatologist when the blood work is in? Liver function? A little high? Sediment rate? A little high?  Auto-immune disease? Yes, I have that too, an auto-immune disease of the thyroid, known as Hashimoto’s Thyroiditis. When is it too high and what do they do about it? A question that has never been answered so far. Should I take Tramadol, “you could give it a try.” I don’t want to give anything a try, I’m frustrated and tired and inflamed and I just want a definitive answer which I know logically I won’t get. The answer is “let’s recheck your blood in two weeks.”

I’m frustrated, even the small flight of stairs in our house seems insurmountable. My ten-year old dog can come up and down those stairs better than I can when I am in a Fibromyalgia Flare (if that’s what this is, we rarely know for sure.) I have to grab unto the shaky metal banister and pull myself up, hear myself groan out loud, the sounds coming from me are more animal-like than I would care to admit. I try not to emit these sounds when my children are home but sometimes I can’t help it. They know I have this illness, but it doesn’t mean I don’t want to protect them as much as I can.

I drove away their monsters when they were little, why can’t I drive away my own?